Archives for April 2017

Oprah’s guest pointed to the place above her collarbone where the tumors first appeared. It’d been a hard fight, with one particularly close call, but she’d made it and now she was a survivor – even a hero. Cue tears from the audience.

Normally I’d have been moved, crying along with the show and applauding the brave woman on Oprah’s couch. I loved stories about women who faced their fears and came out stronger. I wanted to be one of those women.

But the thing was, I had a lump, too. It was in almost the exact same spot as hers. It’d been there for a few weeks now. They’d told me in the clinic that lymph nodes come and go all the time, that I shouldn’t worry if it went away in a week or so, but that I needed to call them back if it didn’t.

But it hadn’t gone away. The thing was getting bigger – a lot bigger. And now there was a new one starting on the other side of my neck. And I wasn’t up to facing it. I was twenty-three years old, about to start a new job as a real estate agent, and the brave woman on Oprah’s couch was mocking me.

I wasn’t feeling any braver when I drug myself back to the clinic. And brave wasn’t on the menu when I had the biopsy, either. And when I finally heard someone say aloud what I already knew – “cancer” – brave had skipped town.

When you’re in a situation that threatens your future, you can’t know at the time that everything’s going to work out all right. All you know is fear. You’re afraid of the lymphoma, you’re afraid of the chemotherapy that’s supposed to save you, and you’re afraid every next test will tell you something you don’t want to hear.

They must’ve smelled it on me because it seemed that every nurse, every receptionist, practically every person I saw at GBO put in something extra to help me feel less afraid. And they were calm. They’d been there and done that, and their calm reassured me. I will never forget those wonderful people. They’ll always be a special part of my life.

But there’s just something about Dr. Jaslowski.

Ever met him? He’s soft-spoken and a little shy. He’s so casual that you can almost forget how much information he’s got in his head, and how brilliantly he can use it. He’s gentle and reserved. But then when you most need and least expect it, he wraps you in this huge kindness and you realize he’s the best person on earth.

There was this one day late in my course, and I’m in clinic for treatment. It was almost routine by then, but for some reason fear had gotten out of the barn and was galloping off with me. My chest was tight, and my mind couldn’t fix on anything to ground me. It felt like trying to catch hold of a branch while falling from a very tall tree. I was a mess.

I’m sure Dr. J had a million other things to do right then. I know it would’ve passed eventually and I’d have been fine eventually. But he came to me in that dark place, and helped walk me out of it. I can’t even recall everything he did or said. I just remember feeling unhinged before he came, and somehow afterwards I could remember where I’d started from and how far and how well things had come.

How do you say thank you for something like that?

All I could think to say, remembering the day I’d seen the brave woman on TV and finally admitted to myself I had a problem was, “Dr. J, you’re my hero.”

He looked a little confused for a second, a bit uncomfortable before replying, “But…you’re the hero. You’re the one doing all the fighting.”

HBO’s newest movie “The Immortal Life of Henrietta Lacks” (seen here) tells how one woman’s death from cervical cancer in the segregated South of 1951 helped fuel generations of scientific discovery – though she never gave permission for her specimens to be used in this way.

Here’re a few things to know:

Most cancer cells can’t survive outside the human body. Cancer cells are more fragile than most people realize, and can’t survive the harsh conditions in the test tube for very long. The vast majority of cancer cells harvested from patients die after only a few hours, but Lack’s cells (dubbed HeLa cells) survived indefinitely. This allowed researchers to observe multiple generations of cell division, and begin to understand that cancers evolve over time similar to the way species do. That’s what made the HeLa cells so unusually valuable.

In 1951, researchers didn’t need permission to obtain tissue specimens for research. When Dr. George Gey, a researcher at Johns’ Hopkins, realized the potential of Lacks’ uniquely aggressive cancer, he sent his lab technician down to the morgue to retrieve more specimens. It never occurred to either of them to ask for her family’s permission – and as distasteful as that seems to us today, informed consent wasn’t required for medical research until the the National Research Act passed in 1974.

The scientific community failed to protect the Lacks family’s privacy. Science can work very efficiently when information is openly shared. But since the genetic information about an individual or family can potentially lead to insurance discrimination, such data must be treated carefully. Unfortunately, details of Henrietta Lacks’ genetic information were widely circulated on the internet before the need for this kind of discretion was generally appreciated – and it wasn’t secured until 2013.

Henrietta Lacks’ story holds special interest to me for a couple of reasons: first, I worked with the HeLa cell lines (among others) while a postdoctoral fellow at the Mayo Clinic; and second, a college friend of mine served as Johns Hopkins Medical Center’s official liaison to the Lacks family, and wrote a book about their reminiscences of Henrietta (which you can get here: purchase book).

I hope that Henrietta Lacks is somewhere, somehow aware of her rich scientific legacy – that her tragic and premature death from cancer has taught us how to save others – and that she’s managed to forgive science for its sins against her.